A Woman's Journey With Rare Disease

Using Professional Skills To Fight Personal Bureaucratic Headaches

For those who weren’t already aware, I was hit head-on by another vehicle on October 8th & just arrived back home yesterday. My blog archive details some of the unique challenges presented to my lungs as a result. (Though I know I am lucky to be alive & am; I’m also truly thankful I did not need vast surgeries or invasive treatments or sustain more serious injuries). I arrived home yesterday finally clear of most pressing & concerning complications. Getting my life back to normal was welcome, but inevitably it was also tempered with some headaches & hiccups…

My rib fracture & other injuries continue to heal. Most of my lung function was affected by the impact to the driver’s side, & the air bag dust had triggered aspiration pneumonia. By now though, my oxygen levels & use have rebounded to what they were before, so it shouldn’t jeopardize my listing.

I’ll find out in my upcoming lung function tests for my transplant center (but also for Social Security Disability benefits) in the next few weeks if there were any serious change on paper that wouldn’t be attributed to changes prior to the accident. I’ll also be given a timeframe of how long my anticipated wait time for my lungs will be.

The price I paid though for putting the headaches & hiccups aside (& solely doing nothing but recovering the entire time I needed to) was obviously a HUGE stack of mail waiting at home yesterday after I had been discharged from inpatient pulmonary rehab at a local nursing home.

With my past surgeries, I had never really been afforded the opportunity to fully recover before having to be bombarded with this either. Yet, I made a conscious choice this time to take the opposite approach: I was going to recover first. Then deal with the realities second. This was a wise move, I was able to tackle most of it today with it feeling like a minor inconvenience & not an additional assault.

I already had caught wind of what was waiting for me at home, since both auto insurances were bugging me even before I left either hospital. (Due to the nature of how I was hit, I did have to meet with an attorney to make sure things get handled correctly & equitably by all parties before I got home, but luckily he came to me & assured me not to worry about anything until I was home.)

That is what I spent most of today addressing.

It triggered several memories of watching claims like this go through the system over time by people trying to do this on their own (sometimes with help; sometimes not). It also reminded me of my efforts to try to help those frustrated callers (who knew little about insurance, or even the health system in general) to ensure things were followed up on, forwarded properly, & dealt with in a timely fashion.

That said, speaking honestly, there’s a part of me that does resent having to go through this entire process myself.

As my best friend said at my bedside the day of the accident, “At the top of the ‘List of S**t Nicole Does Not Need Right Now’, This is it”.

But luckily, I finished the auto forms, & accident detail letters relatively quickly. I then sent them off to my attorney’s office for review & circulation to create a paper trail for us both.

I was pleasantly surprised when I opened another set of mail I had sorted to go through today…

For now, at least, I received a letter that I had finally been approved for Social Security Disability (SSD) benefits. This is of course pending my successful completion of the tests & physical on November 9. I also received a separate letter detailing that visit.

Yet, for someone who knows a lot of “inside baseball” as a former customer service representative/account manager for a smaller group health plan administrator, I was pleasantly surprised at this news. Maybe my skills had helped me navigate this process more quickly & easily than I had anticipated?

I had in my back pocket, numbers to call for further and/or legal assistance if I needed them in the event of a denial or potential appeal. I guess I am just so used to professionally & personally anticipating best & worst case scenarios simultaneously that my efforts paid off. I also tried to use the jargon, language, & terminology to work in my favor through the entire process, even though I felt pretty ignorant of & stupefied by it.

I was also amazed & frustrated at the redundancy & antiquated methods of the whole SSD process as whole from day one, too. I had provided ample records throughout the process, even from personally walking a few recent ones down to the local office after I had completed the online application to bolster it because I didn’t just want them mailed into a vacuum or have them get lost in a box. I wanted someone to physically attach them to my application because the electronic application wouldn’t allow it. (This experience of visiting the administrator’s office reminded me of many unpleasant waits at the DMV).

Yet, they continued to require more & more proof even after having both my providers & me submit an ample, (almost ridiculous) amount of additional medical records on top. Also forms & additional documentation that could not be emailed to a “real” person. It could only be transmitted by fax or mailed directly to a general office.

After completing that step, I received a rather rude phone call from another representative stating I was still required to undergo independent testing for their selected date (which happened to be 2 days before my next transplant follow-up appointment) & time.

This call was made after I had made 2 previous attempts to return communication to a postcard that said I was required to make a call to a specific person within 5 days or it could affect my eligibility.

I never actually received a call back to those 2 calls & voice messages either.

That said, I do understand why the verification has to happen & will go through with it & have tried (even in the face of intended but unnecessary flack) to remain sane, calm, & do the needful.

I guess this particular government entity really does thrive on not only being a luddite so this can’t be transmitted to an assigned person electronically in order to deal with this process from the start on a one-on-one basis (though I concede this: I live in PA, so I can only speak to this state’s handling on behalf of the government). They also make clear that the applicant is solely nothing but a number to them & that applicant is a drain on society for even requesting services, even when there is the work history & medical “proof” to show that person qualifies. This is exactly the attitude that’s given off with most of this process, the handling, & communications.

I am happy (for better or worse) to have had those skills to help myself through both of these recent processes & now it entails mostly formalities going forward.

[The only other loose end is the transition to COBRA, which scares me much less, because I’ve been so familiar with it through job changes or other professional experiences. (It’s a pain, but I know it is more straightforward to me than the SSD or auto end accident handling is. I have plenty of skills & strategies for COBRA wrinkles learned the hard way through past experience before I changed sectors. I also have support inside & outside of my carrier if I need it; so I’m settled with that.)]

If all goes according to plan, I’m finally eligible in January 2016 for SSD benefits once my waiting period is up (that period is 5 months from the last date worked). I also have the proof I need if my long-term disability through my employer requires any documentation that I went through the process or any additional verification so hopefully that is a wrangle I can avoid altogether too. I can also to provide this notice to my transplant center team for further planning & coordination.

If I didn’t have these skills, all of this certainly would have been more lengthy, drawn out, & frustrating for me. I know this to be true even with the skills & resources I have because I couldn’t help but feel that way at points.

I’m also blessed with a great transplant social worker who I know would have tried to help if I really, truly, did get stuck.

I often feel for people who are in this predicament of needing disability benefits who aren’t assigned someone to help or don’t qualify for Medicaid (like me) but their diagnosis or health problems don’t give them access to a social worker or any other resources to help them navigate the SSD system because it can be equally as frustrating & murky as the healthcare system at points.

Who helps them with this process if they are left to fend for themselves? Doctors, to a degree, I guess.

I am talking about more than just completing forms with what is actually needed in the way of assistance. I’m talking about helping someone understand & navigate the entire process to clearly know what is needed to get successfully approved.

It was only because I was in a nursing/home rehabilitation center & knew a few attorneys as friends that I was able to even find helpful numbers to call upon if I had needed further assistance.

This type of help in navigating these treacherous waters is simply not out there in front enough for the general public to know about, much less access. That is truly unfortunate because it puts the person who really needs the benefits at a disadvantage from the start.

I find the lack of resources distressing not only as a former professional both in healthcare & insurance, but also as a person navigating the system for themselves.

The lack of tangible assistance with this process is a true crisis that most people can’t fathom; until they are swept up in it themselves. By then it is almost too late & there is a strong undercurrent that is draining & hard to fight by oneself.

We need good brainstorming to be done from all angles on how to allow people to help themselves with hacking though this type of red tape in a real-time & real relatable way.

I am one of those people. You are lucky to have the background that you do, because it’s a lot less scary than it could be if you were flying blind. Unfortunately, the doctors really don’t help – or at least, they don’t help me because my diagnosis is still a mystery after 5.5 years. I know I’m going to have to at least make it to the hearing that will inevitably happen in January or February of 2017, and for now I trudge along to my appointments and beg doctors not to push me out the door and tell me to see someone else, just not them. I have bombarded the disability reviewers with documentation too; I got a gold star from my attorney for being thorough and informative. I guess we are playing against the clock and hoping that someone will be able to name my disease by the time my case is in front of the judge.

I am so, so glad that you don’t have to fight on that front anymore. At least your reviewers showed some semblance of sense.